Fibromyalgia: Surviving an invisible misery.celebrities face fibromyalgia

At the age of 71, Oscar-winning actor Morgan Freeman was in a car accident that left his left hand paralyzed and triggered nerve damage. <br />"It's the fibromyalgia," he told <a href="" target="_blank">Esquire magazine</a> about the pain in his arm. "Up and down the arm. That's where it gets so bad. Excruciating." <br /><br />He says he takes fibromyalgia in stride. "There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I still work. And I can be pretty happy just walking the land."<br />

(CNN)Do you ache all over? Do you find yourself exhausted even after a full night’s sleep? Does just the slightest touch on certain spots on your body make you want to scream in pain?
You could have fibromyalgia, a painful musculoskeletal disease characterized by widespread muscle pain, oversensitivity to common pain, extreme fatigue and sleep, mood and memory problems.

What is fibromyalgia?

In 2003, singer Sinead O'Connor left her singing career, telling <a href="" target="_blank">Dublin's Hot Press</a> it was because of family needs and the growing fatigue of her debilitating disease, fibromyalgia. She returned to singing in 2005.<br /><br />"Fibromyalgia is not curable. But it's manageable," O'Connor told the magazine. "I have a high pain threshold, so that helps -- it's the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful."

Fibromyalgia’s name comes from “fibro” (the Latin term for fibrous tissue), “myo” (the Greek word for muscle) and “algia” (the Greek word for pain). According to the National Fibromyalgia Association, an estimated 3% to 6% of the world’s population suffers from the condition: about 450 million people, including at least 10 million in the United States.
Fibromyalgia is considered a rheumatic disease like arthritis because it impairs joints and soft fibrous tissues like muscles, ligaments and tendons. But fibromyalgia is not a true form of arthritis, as it doesn’t cause damage to those muscles and joints.
Instead, the disease wreaks havoc with the body’s pain centers, causing muscle stiffness and pain, intense fatigue, difficulty sleeping, migraines and terrible memory and concentration issues, often known as “fibro-fog.”

What’s fibromyalgia feel like?

Actress and comedian Janeane Garofalo makes fun of her fibromyalgia as part of her comedy. Prescribed an antidepressant to treat the condition, she <a href="" target="_blank">quips</a> at many of her live shows, "I had no idea I was chronically dissatisfied."

Those who struggle with fibromyalgia say the muscle and tissue pain can include a deep, achy misery, an unbearable throbbing or stabbing, or an intense burning sensation. Often, the pain occurs in muscle nodules, or myofascial trigger points, causing restricted movement and full-body agony.
“I used to say it was like a blowtorch,” said Lynne Matallana, co-founder of the National Fibromyalgia Association. She began the advocacy group in 1997 after years of suffering from chronic pain.
“The pain radiates out so much that your skin, your hair, your nails, everything hurts. Anything that touches you hurts you. You can’t wear jewelry; you can’t wear anything with a collar or rough texture. I used to put pillows at the bottom of my bed so the sheets wouldn’t touch my legs.”
Overwhelming fatigue is another classic symptom. Between the pain and the exhaustion, says Matallana, she often felt despair.
Before her death in 2017, Rosie Hamlin, the lead singer of Rosie and the Originals, was outspoken about her struggles with fibromyalgia and the years it took her to "rethink" her life. "I spent six months to a year pacing at night and just crying because of the extreme burning," she told <a href="" target="_blank">Fibromyalgia Aware magazine in 2004.</a> "The burning was so bad that I put my arm in the freezer and I'd do that for 15, 20 minutes. Then I'd grab a bag of ice, put it on my head, on my face, on my hip, on my legs -- whenever the pain moved to<strong> </strong>would just be such extreme burning. The concentration was equally bad. I was afraid to talk to anybody on the phone. I couldn't carry on a coherent conversation a lot of the time."
“You feel like you can’t move, you can’t think, and time seems to last forever and ever,” she explained. “You lose sense of the fact that you could be better.”
Fibromyalgia suffers often have sleep issues, such as restless leg syndrome, and struggle with frequent sleep disruptions. The National Sleep Foundation calls the connection a “double-edged sword: the pain makes sleep more difficult and sleep deprivation exacerbates pain.”
Because both pain and exhaustion are invisible, it’s often hard for anyone with fibromyalgia to convince family and friends of the extent of their misery. To make matters worse, it wasn’t long ago that many doctors thought fibromyalgia was psychosomatic. Sad stories of going from doctor to doctor only to be told that the pain and fatigue are “all in your head” are common among patients; as are stories of losing marriages, relatives and friends who could not understand the debilitation that the disease can cause.
British model Jo Guest went through a lot of medical exams over many months before she was diagnosed with fibromyalgia. "At first I thought it was just a virus, but it just wouldn't stop. I was getting up and being sick all morning and having to spend the afternoon in bed," she told <a href="" target="_blank">ITV's This Morning Show</a>. "When you come out of hospital and you're told everything's normal, you should be happy but I don't want to be told everything's normal -- I just want to be told what's wrong with me."
“Doctors didn’t accept it; patients didn’t know what was wrong with them,” Matallana said, describing what having fibromyalgia was like a decade or so ago. “Everyone felt so hopeless. I did a lot of suicide prevention counseling in the beginning of my work with the foundation.
“I always believed that if you went to a health care provider, they would have an answer for you. I didn’t realize there are things they just didn’t understand,” she added, explaining that many doctors wanted to help but didn’t know how.
“What I would often hear is, ‘We don’t believe it’s being caused by anything other than stress or whatever. You need to change your lifestyle.’ ” It was like they were saying, “I don’t know what to do to help you, so go do this, so I can take care of a patient I know how to help.”
“So I quit work, I stayed at home, I tried to exercise and reduce stress,” Matallana said, “but we didn’t know enough about how to put those actions into a workable plan that would slowly help me get better.”

What causes fibromyalgia?

Fibro can strike at any time. Symptoms often begin after a traumatic physical event, such as a car accident, surgery, even infection. Flu viruses, herpes simplex, the Epstein-Barr virus and hepatitis B and C may contribute to the onset of fibromyalgia.
Actress A.J. Langer got into acting because she was in too much pain to do the sports she loved as a young tomboy. Even though her mother had been diagnosed with the condition, Langer <a href="" target="_blank">told Lifescript</a> doctors never considered fibromyalgia as a medical possibility. <br /><br />"Doctors used to think the pain was all in my head. At one visit, I heard a doctor tell my mother I was faking it. My symptoms got the best of me (at age 21), and I was laid up for about a year with pain, fevers and stomach troubles. That's when I was finally diagnosed with fibromyalgia."
Psychological or emotional stress such as abuse, the loss of a parent or going to war can also trigger the disease. A recent study in Finland found that being exposed to family trauma such as alcohol and financial problems, chronic illness and depression or divorce while growing up was associated with a diagnosis of fibromyalgia later in life.
There’s even a link between sleep disorders and fibromyalgia. A study in Norway found that women older than 45 with frequent sleep issues had five times the risk of developing fibromyalgia than sound sleepers.
Most famous for her role as Erin Walton in the TV series "The Waltons," actress Mary McDonough struggled with pain after a 1990 car accident before finally being told she might have lupus and one or two of its cousins in the rheumatoid family.<br /><br />"I developed ulcers, lumps in my back and legs, and began losing my hair. I developed fibromyalgia and Sjögren's syndrome, a condition that causes dry eyes and mouth, " <a href="" target="_blank">she told Lifescript.</a> "I felt like a failure. My husband and I separated after seven years of marriage, and then got divorced."

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